If you’re new around here, I am getting personal in this series of emails. I want to share more about how I ended up in this space as an artist, mom, advocate, and community support professional.  You can catch up on them here: one, two, three, four, five, six, seven, and eight.

As I thought about where to go next with telling this story, I have to be honest and tell you that I felt a major mental block. I’ve always been an intensely private person, which might come as a shock since you’re currently nine emails deep into a super personal email series. Maybe the earlier emails were easier to write because there was more distance between what happened and who I am now.

In the last 5 years or so, it feels like so much has happened that I sometimes struggle to find words to describe it all. When I do, it sometimes seems surreal. I’ll do my best to be concise and deliver my experiences to you with intention rather than information overload.

After our wedding in late 2013, I was doing really well. I transitioned from working 3 part-time jobs after graduation (nannying, portrait modeling for art students, and managing the post-production work & album design for a wedding photographer) to working full time 5-6 days a week as the front office manager for an acupuncture and therapeutic massage clinic. Travis was working as an associate medical sales rep. Basically, we were both logging long work weeks. Life felt pretty normal for 2 newly married recent college graduates. Best of all, I transitioned onto immune suppression therapy my senior year of college. I was taking an anti-rejection transplant drug as an off-label use, which meant I no longer needed regular IVIG infusions.

In June of 2014, we moved out of our tiny 500 sq ft apartment in Annapolis and drove a U-Haul down to Columbia, South Carolina so Travis could take a promotion at work.

Trading in crab cakes and brackish bay water for intense humidity, spanish moss, and months-long stretches of triple digit days, we did our best to build a life in our new home. Travis worked long hours—often driving 4-6 hours a day for work. I found a job at a locally owned and small design studio. I struggled to find an MG specialist in the area, but I was stable and was not worried.

I did learn that finding a neuromuscular specialist who knew how to treat MG was not an easy task. I should have known this from my experience trying to set up care in Boston, but I also had such great luck finding someone when I moved to California and when we were living in Annapolis. What I didn't learn the first time around, I quickly learned this time. My neurologist at Johns Hopkins faxed my medical records to Duke, but they wouldn’t take me on as a patient. That’s the risk that comes with changing care when you have a rare diagnosis—specialists review your records and then decide if they’ll take you on or not. At the time, my case was fairly uninteresting. I was stable. They passed on taking me on as a patient. We sent my records to a few more teaching facilities in the area before finally receiving a letter in September that I was accepted to the neuromuscular clinic locally at University of South Carolina and would be seen in January.

The day of the appointment, I arrived alone to an empty office. Without an attempt to contact me or an explanation, my appointment was cancelled and rescheduled for April. No one was in the office except for the scheduler. I told her with some tears and a few choice words to shred my file and cancel the appointment. This was the first time I experienced what I knew was out there, but had never encountered as an adult—inadequate care. All those feelings of being a kid who wasn’t believed, who was accused of faking, who was "other" and "different" came flooding back. 

Then, I got angry. And then I got motivated.

I needed to start problem solving because I was almost out of medication and too far past my last appointment at Johns Hopkins for them to legally write a refill renewal. I was fortunate that they knew me well and were willing to help. Working with the amazing medical assistant there (bless you, Phyllis), we started hustling to find a solution. Could I take time off work and fly back up to Baltimore? Could we reach out to Duke again or check in Georgia at Emory? What facilities were within a days drive who would be willing to see me? The wait times for new patients at these neuromuscular clinics were 6-8 months out. No, I needed something faster.

Leaning on connections made in MG support groups on Facebook, I was able to get the name of a neurologist in Atlanta who could see me within 2 weeks. Phyllis got all my medical records to him immediately. He wasn’t associated with a major teaching facility—I knew I was taking a chance. We drove the 4 hours there and set up care. He was young, knowledgable, and willing to work with me, but not a neuromuscular specialist. He didn’t have much experience with MG. I felt like that didn’t matter because I was stable. In fact, I was doing so well he felt that it was the right time to try tapering down my immune suppressant. He updated and wrote a refill for my prescription and I felt satisfied, knowing that Travis and I would make the 8 hour round trip drive once or twice a year.

Emergency averted and script in hand, I carried on. 

After that appointment, I got involved with my first MG walk serving as a local walk hero for the first MG awareness walk in the state of South Carolina. I was spent more of my free time investing in the MG community as an advocate, fundraiser, and volunteer using my own experiences to support newly diagnosed patients. I also started painting more, traveling regularly, taking on more responsibilities at work, was running and weight lifting several times a week, and we even adopted our sweet rescue pup, Rylee. I felt secure and stable. Maybe even a little bit invincible. 

Even though I knew that another remission was unlikely, I felt like I was a success story.
 

That all changed in June 2015, ironically, during Myasthenia Gravis Awareness Month. In the span of just a few weeks I was fired from my job, started a new business, and became sicker than I had been in more than a decade.